Turning Knowledge into Power

The connection between Jewish women and cancer is unsettling, even terrifying, yet undeniably real. Too many have been diagnosed to be simple coincidence. What’s happening to Jewish women? What can we do about it?

On December 9, 1999, the University of Southern California/Norris Comprehensive Cancer Center, the Jewish Federation and Hadassah hosted the conference “Cancer Genetics: Health, Hope and the Jewish Family.” The conference brought a group of physicians and experts to the Skirball Cultural Center in Los Angeles to explore those questions and try to provide some answers. “We care that our community get the facts that can make the difference in their lives,” said Federation President John Fishel.

The problem, according to conference speakers, is in our genes. In 1994, two genes were discovered — BRCA1 and BRCA2 — that significantly increase a woman’s risk of breast and ovarian cancer. And, unfortunately, Jewish women are about 10 times more likely to carry one of these mutations than the general population. “If the individual is an Ashkenazi Jew,” says Alexandra Levine, M.D., medical director of the USC/Norris Cancer Hospital and chief of USC School of Medicine’s Division of Hematology, “the chances of carrying one of those genes is about one in 40, or two-and-a-half percent.”

And the effects of those genes are profound. According to Levine, the lifetime risk of getting breast cancer for a carrier of BRCA1 is 50 to 85 percent. The risk of ovarian cancer is somewhere between 15 and 45 percent. And the lifetime risk of getting a second primary cancer if you’ve already had one is 40 to 60 percent. The risks associated with BRCA2 are about the same.

But the idea conference speakers stressed most was that although the numbers are frightening, they are also empowering. Because knowing that these genes exist means we can test for them, and when they’re found in an individual, we can act.

“If we know that the gene is there, we might allow early detection,” says Dr. Levine. And there is now a host of preventive measures women can take, everything from birth control pills, to drugs like tamoxifen, to prophylactic surgery. While none of these measures eliminates the risk of cancer, they can reduce it significantly. And knowing you’re a BRCA carrier means you can discuss those options before cancer ever appears.

So how do you know if you should be tested for the BRCA genes? The most telling signal is family history. “If you have two or more relatives on the same side of the family with cancer, as a geneticist, I would look at that person more carefully,” says Dr. Levine. “Breast cancer normally occurs when you’re 50 or 60, but here’s someone who develops it at the age of 30, that’s another indication.” Other indicators are people with multiple cancers. And, as Beth Karlan, M.D., director of Gynecologic Oncology at Cedars-Sinai Medical Center, points out, “your father’s family history is just as important as your mother’s.”

Of course, testing presents its own risks. Just because someone doesn’t carry a BRCA gene doesn’t mean they’ll never get cancer. The knowledge of being a carrier may cause undue stress and fear. And, in a larger context, genetic testing is so new that government hasn’t caught up, and a positive test could create insurance or employment problems. But even with pitfalls like these to navigate, knowing you’re a carrier empowers you to act, a principle message of the conference. “If you’ve been tested and you find out you’re positive, you don’t have to sit there and just feel victimized by it,” says Dr. Karlan. “You can be proactive. You can do something about it.”